Overview

In this section you can find out about the experience of having a relative in a vegetative or minimally conscious state. The two researchers travelled all around the UK to talk to 65 people in their own homes. Here you can hear and see people share their personal stories. Find out about issues such as hope, care and treatment, making decisions, impact on the family and reflections on consciousness, recovery and the end of life.

You can start viewing topics by clicking 'Next Topic' above, or selecting from the list on the left. You can also view 'People's Profiles' from the tab above.

David: She – you know, she wasn’t there. She wasn’t there. You’re – like I say, in the early days you were looking – I looked so hard, I wanted to find – I wanted to find I think in my head, I wanted to find something, and I would make – you know, not make anything up but you would look deep in her eyes. You know, no one else in the room, just holding her hand, you know, is there? Is there?

Angela: I don’t know where he is, I don’t know what he’s experiencing. I don’t know anything about it, and just not knowing. You feel, okay, I don’t think he’s in pain. And that’s very important of course. I just would hate to think of him being afraid. Or lonely. And I can't tell, I can't tell how he’s feeling.

Mark: But when you’re looking at somebody and they’re looking straight in your eyes and they start crying, you can't not take any notice of that, I don’t care what anybody says really. And if that coincides with something that you’re talking about, that you suddenly think, well, actually he might find that a bit distressing, it does make you think a bit more.

Morag: You know, and where there’s life, there’s hope, was something that we just kept saying over and over and over again, “where there’s life, there’s hope”, and we never gave up hope really, ever.

Mikaela: I should – you know, I should be grateful that he's alive, and that's the way I think sometimes. I'm guilty that I'm even thinking these things. But I know what he wanted and I knew my father and I knew that this isn't what he would have wanted.

Rifat: He went in his own way. And then everything boils down, my mum is like, “Why did we take him to the hospital? Why did we take him to that hospital?” So this why, why, why, why, is never ending

Phil: Even though I know that the chances of him recovering meaningfully are next to none, there is always some sort of hope that maybe he can. And that’s part of what drives you every day. Otherwise- if you didn’t have any hope, I don’t think you could do it. Because on the days that I feel – I don’t feel hope, I want to run away, but I could never leave him there.

Supported by:
Economic and Social Research Council, Knowledge Exchange Grant [ES/K00560X/1]
Financial support from the Health Experiences Research Group